Book talk: “Still Alice,” by Lisa Genova

Disclosures: I bought this book for my personal library, and I intend to keep it indefinitely. *The purchasing link at the end of the review goes through my Amazon Associates account.

Still Alice by Lisa Genova

Still Alice
Lisa Genova (blog)
Pocket Books, 2009 (paperback) (ISBN 1439102813 / 9781439102817)
Fiction, 320 pages

First sentence: “Alice sat at her desk in their bedroom, distracted by the sounds of John racing through each of the rooms on the first floor.”

Random clip: “Sitting on the bed, she read page after page of her daughter’s dreams and confessions. She read about blocks and breakthroughs in acting classes, fears and hopes surrounding auditions, disappointments and joys over castings.” (page 164)
Book description: Alice Howland is proud of the life she worked so hard to build. At fifty years old, she’s a cognitive psychology professor at Harvard and a world-renowned expert in linguistics with a successful husband and three grown children. When she begins to grow disoriented and forgetful, a tragic diagnosis changes her life — and her relationship with her family and the world — forever.
Comments: For personal reasons, I have held off on reading this book for months, despite all the good things I’d heard about it. I have to thank Lisa at Books on the Brain for the review, and subsequent e-mail conversation, that gave me the nudge to dig it out of TBR and make a plan to read it in October, when I would be participating in the Alzheimer’s Association Memory Walk with my family. We participate in this annual 5K walk to raise funds for the Alzheimer’s Association and its work in raising awareness, supporting research, and providing resources for Alzheimer’s patients and their families. We’re involved with it because my mother, who passed away ten years ago after seven years in a nursing home, may have had early-onset Alzheimer’s.
I say “may” because we don’t officially know, but it’s the most common of a few possibilities, so that’s what we go by. There are other forms of dementia that present in similar ways, and are more likely to be found in younger people; my mom’s symptoms began to show when she was in her early fifties. However, because she had a lifelong fear of doctors, we were unable to get her to seek medical attention for the changes she was going through while she still could have talked about them and been tested. Even so, a brain biopsy is still the only way to confirm a diagnosis of Alzheimer’s, and it’s performed after death; although we asked him to, my father didn’t make the necessary arrangements for that to be done, so we’re lacking some very important information. The fact that early-onset Alzheimer’s usually has a strong genetic connection makes not having a definite diagnosis especially problematic; I don’t know of anyone else in my mother’s family who had it (although some relatives did develop the more common elderly version), but what does it mean for my sister and me?
Whether or not EOA actually was the cause of my mother’s dementia, what I remember about the onset and progress of her condition is a lot like what Alice Howland, the title character of Lisa Genova’s novel Still Alice, is going through. Alice is 50 years old, the mother of three grown children and a prominent professor of psychology and linguistics at Harvard, when she finds herself lost and disoriented while out running one day. She’s been forgetful lately too, but she’s been attributing her mental lapses and other slip-ups to menopause and”normal” aging; now she wonders if it’s something else. After she sees a neurologist, she learns that it is indeed something else; her tests come back indicating a probable diagnosis of early-onset Alzheimer’s, and a genetic screening confirms that she does have the accompanying mutation. Drugs are prescribed that may help slow the progression, but Alzheimer’s is incurable and unstoppable, and Alice’s life will never be the same. Little by little, and all too soon, she will lose nearly everything that has made her who she is.

Lisa Genova, a neuroscientist by training who originally self-published this novel, has done a remarkable job of truly getting inside the mind and emotions of an Alzheimer’s patient. She includes a lot of real information about the disease and its effects in ways that don’t distract from the story, and she effectively captures its disruption and alteration of family, career, and daily life, but the fact that it’s all told from Alice’s perspective makes it unique and unforgettable. The reactions of Alice’s family and colleagues to her condition rang true, but  Genova makes the reader grasp Alice’s own reactions too.  The instances where the author “loops” an episode by repeating its opening paragraphs at the end,  and when she frames  Alice’s behavior with someone else’s response to it, do an especially good job of illustrating what’s happening and making the reader connect with it.

I could feel Alice’s fear and frustration over the changes she was experiencing  most specifically  as she was losing communication and reading comprehension; those are two things I particularly remember about my mother’s condition. In addition to the mental illness – technically, that’s what Alzheimer’s is – my mother had low vision for her entire life and was nearly blind during her last years. I knew she hadn’t been reading for a while before she entered nursing-home care, but I’d thought it was because of her eyesight; now I realize the dementia may have been part of it as well. (If you know me through this blog, I’m sure you can imagine how unsettling this is.)

I had postponed reading Still Alice because I was pretty sure it would be a difficult book for me, emotionally – and it was, but not quite in the way I expected it to be.  It got under my skin, and it’s stayed on my mind. It made me sad, although it didn’t make me cry; but more than that, it scared the hell out of me. I was engrossed and moved by Alice’s story, and I feel that it gave me a lot of insight into Alzheimer’s that I didn’t have before – but knowing more has made me more afraid of experiencing this than I was before, too. I’m just five years younger than Alice, and not much younger than my mom was when she began to slip away – and I DO NOT WANT THIS to happen to me.

I’ll be keeping this book, and recommending it to everyone, whether or not their lives have been touched by Alzheimer’s – it’s frightening, but it’s also enlightening, and it’s a tremendously worthwhile read.
Rating: 4/5

Reading Challenge Commitments: #15 of 20 pledged for the Read Your Own Books 2009 Challenge; #1 for the Clear Off Your Shelves Challenge (25% of books read in October and November 2009)

Related: a need for greater understanding of the physical impact of Alzheimer’s and other varieties of dementia – it isn’t just “mental” illness with little effect on the body

When I mentioned here on the blog that I was planning to read this book during the week of our local Alzheimer’s Association Memory Walk, I asked if anyone would be interested in reading it with me. Wendy of Musings of a Bookish Kitty took me up on it, and shared her impressions earlier this week. If you’ve read Still Alice recently too, please leave a link to your review in comments! These bloggers did:

The Book Chick

My sister Teresa doesn’t have a blog of her own, but she also read the book, and gave me her review to post here:

When my sister asked me to review the novel, STiLL ALiCE by Lisa Genova, I was hesitant. I said to my husband, “This may be difficult.” In truth, parts of the book were hard to read, but not because of Lisa Genova’s writing – because of novel’s content. Alice, the main character in the book suffers from early on-set Alzheimer’s disease. She is only 50 years old and an acclaimed linguistics professor at Harvard. The novel is told from her perspective. It is an interesting, thought provoking approach to view the progression of the disease. It is ironic that Ms. Genova decided to have Alice specialize in linguistics, for language and communication are so greatly impacted by Alzheimer’s.

My mother was a victim of early-onset Alzheimer’s disease. Honestly, I wish I had a book such as this to read 17 years ago when she could no longer communicate well and could not take care of herself any longer. This was a really quick read for me. Despite its content, I felt compelled to keep picking it up – each time getting closer to the painful, inevitable conclusion. The story is broken down by months showing the progression of Alice’s disease and her response (along with her spouse’s and children’s responses) to it. Lisa Genova is very adept at presenting both intellectual and emotional responses from and for the character. While I personally had an emotional connection to the subject matter, I wouldn’t hesitate to recommend it to someone who has not. Awareness of this disease (particularly early-onset Alzheimer’s) is not that high in comparison to awareness of other diseases. It’s time for that to change.

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  1. I mentioned this one someone else's review but I'll say it again here: this disease scares the H*LL out of me. I can't imagine losing all the memories that make me who I am. I admire you for reading this when you've experienced your mother's decline – I can't imagine how difficult that must have been.

    This book is a must-read for me, but I don't know when I'll get the nerve to pick it up …

  2. Heather J – Believe me, I understand where you're coming from – like I said, it terrifies me too. I'm not sure when I would have worked up the nerve to read this either if my discussion with Lisa hadn't brought up tying it in with the Memory Walk.

    Even though I had a pretty good idea of how the story would go, I couldn't put the book down.

    Jonita – Thanks; I've edited the review to add your link. "Powerful" is definitely the word for this one.

  3. I think I'd be nervous about picking this one up too — my grandmother (who I had a lot in common with) had dementia and probably Alzeheimer's (never officially diagnosed).

    When it started, it was especially painful when she would realize, by the look on our faces, that she had just repeated herself. I miss her a lot (she passed away a few years ago) and I admit I worry whenever I have a forgetful moment!

    At some point I may be brave enough to pick up this book; I don't know.

  4. This sounds like a painful book to read. I feel very fortunate that both of my parents (almost 83 and almost 90) still have their mental faculties. Alzheimers is one of those diseases that affects the whole family. I really want to read this book, but I think I'll wait until after the holidays.

  5. One of my book groups chose this for this month's book. When I heard what we would be reading, I wrinkled my nose and sighed. This was a book I intended to give a miss as it just didn't much interest me and had such potential for the treacle that was evident in Nicholas Sparks' The Notebook (a book I loathed). I can't begin to explain how glad I am that I was forced to read this. The group's discussion was more personal than focused on the book but the book is really well done and viscerally effecting. And it is a book everyone should read. Great review.

  6. Aimee – I hope you'll blog about the discussion. This book gives you a lot to talk about!

    Valerie – I understand, and I felt the same way. I bought the book, but let it sit for awhile, and really wasn't sure when I'd feel ready for it. But even though it was a difficult read, it was worth it – I hope you'll take it on one of these days.

    Diane – It did read like a memoir, in a way, which is somehow ironic.

    Kathy (Bermudaonion) – My dad's 80 and doesn't seem to be slipping all that much – maybe he's got the dominant genes. We can hope so, anyway.

    And waiting till after the holidays to read this is not a bad plan.

    Kristen – Aside from my concerns about the subject matter, I was a bit worried about the book being emotionally manipulative (what you aptly call the "treacle" factor). I'm glad I was wrong about that; it earns an honest response from the reader. I'm glad it went over so well with your book club!

  7. Thank you for the wonderfully written review and for sharing your personal connection to the book. My husband's grandfather was diagnosed with Alzheimer's, and I've heard stories from his grandmother about how hard it was caring for him. This sounds like an emotional book, one I'd like to read at some point.

    Diary of an Eccentric

  8. Anna – The author has done a very good job of working a lot of information about Alzheimer's into the story without having it get in the way of the story itself; I was impressed. I hope you'll check it out.

  9. I read your review the day you posted it but am just now getting around to commenting (as you can see).

    Thank you for your thoughtful and heartfelt review, Florinda. I mentioned it on twitter, but I'll say it again here. You brought tears to my eyes. I am so sorry you and your family had to go through this. I think it is wonderful that you are so vocal about your support for Alzheimer's research. It's an important cause.

    I am glad Lisa convinced you to read this one and even more glad that you encouraged me to pick Still Alice up and read it alongside you.

    Thank you too to Teresa for sharing her thoughts on Still Alice.

  10. Wendy (Literary Feline) – Thank you (again) for reading this with me. I know it wasn't an easy read for you either.

    There are so many illnesses where the patients can advocate for awareness and attention – and not to take away from breast cancer, etc., but by the nature of the condition, Alzheimer's patients are limited in their ability to do that. That leaves it up to the rest of us.

  11. Swapna – You're welcome. I'm glad Literary Feline posted her review first – I'm not sure I would have included so much of my personal connection to the material if she hadn't influenced me to talk about it.

    It's been great to get such a positive response to this review!

  12. Florinda, {{hugs}} Oh my gosh, you did it. I wasn't sure you would. I'm so happy you responded to the Still Alice in the way you did. It was such a powerful book. Thanks so much for sharing your personal connection and your sister's thoughts as well. I'm off to read Wendy's review now.

  13. Lisa – Thank YOU for the encouragement to go ahead and read this, despite my misgivings! I'm really glad I did – it's a "must read" in so many ways.